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Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 03:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/21/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Jan 23, 2021 11:14PM LW422 wrote:

Hello everyone. I decided to check in with the IBC Lounge since I have been diagnosed an unwilling participant. Got the news on 1/20/21 and expecting to begin treatment in early February. I was just reading my oncologist's "follow up notes" and discovered that since my "PR" value is a measly 12%, I will likely be classified triple negative. Since I have no idea what any of this means, should I consider this more bad news? Like, how much bad news do I have to get? I'm about done with bad news.

Glad to meet you all, but I hate that we are here.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 24, 2021 11:32AM Bklynstoops wrote:

Welcome LW422, and I hate that you are joining this club as well. I don't want to weigh in on the triple negative aspect, because that was not my diagnosis, but I will say, I drove myself crazy with reading every piece of research and commentary I could get my hands on after my diagnosis two years ago - and it led me on a terrifying emotional rollercoaster - especially reading all the doomsday statistics that go along with IBC. Finally my oncologist said to me, "Stop reading so much. Statistics are about large populations, and I am not treating a large population, I am treating you. We'll see what works and what doesn't work for you, and take it from there."

In the beginning, I couldn't read a lot on this forum, I found it overwhelming and would usually end up crying reading the names of people who are no longer around. But I have gotten so many great tips for getting through treatment - little things that make a world of difference in the moment - like Ayr nasal gel every night for your nose that no longer has hair - and if you have any questions about things like that, just ask - this board moves a little slowly but everyone has been so very helpful to me, and it also helps to join the boards related to the specific treatment you are in at the time.

Also - for the radiation sores thread that I missed (my husband was diagnosed with aggressive prostate cancer in December - lucky us!) - my best friend was diagnosed the breast cancer last year, she did hyperbaric treatments after her radiation sessions (6 weeks) on the advice of another doctor and her radiation oncologist couldn't believe the results - her skin never blistered or had anything more than some redness. (Anecdotal of course, but I'm always looking for things that can help make the brutal treatment process easier for people who come after.)

Dx 2/6/2019, IBC, Left, Stage IIIB, ER+/PR-, HER2+ Chemotherapy 2/25/2019 Taxol (paclitaxel) Targeted Therapy 2/25/2019 Perjeta (pertuzumab) Targeted Therapy 2/26/2019 Herceptin (trastuzumab) Chemotherapy 5/22/2019 AC Surgery 8/14/2019 Mastectomy: Left; Prophylactic mastectomy: Right
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Jan 24, 2021 12:24PM Traveltext wrote:

Welcome LW. We'll try to help you through treatment. Triple neg is generally not regarded as a favorable diagnosis, but treatments have improved over the years.

Great post bklynstoops. Sorry to hear about your hubby. Note that while I have both those cancers I’ve been in remission for both for the past five years

I'll add my favourite bit of advice from my onc: never have any pre-conceived notions about any aspect of diagnosis or treatment for this disease.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jan 24, 2021 12:57PM - edited Jan 24, 2021 02:55PM by Bklynstoops

Good to know Traveltext - thank you. We're actually considering this a blessing, he has a rare kidney disease (and sarcoidosis) and was in the process of getting reviewed for a kidney transplant when they discovered the prostate cancer. He's still asymptomatic and is considered young for it to have advanced so quickly (Gleason 9), so we're incredibly thankful it was discovered as part of the process. Waiting for his bone scan results now - and now he truly understands my scanxiety.


One more thing LW422 - my favorite writing on cancer, and one that I reread every time "bad news" anxiety pops up - is The Median Isn't the Message by Stephen Jay Gould.

Dx 2/6/2019, IBC, Left, Stage IIIB, ER+/PR-, HER2+ Chemotherapy 2/25/2019 Taxol (paclitaxel) Targeted Therapy 2/25/2019 Perjeta (pertuzumab) Targeted Therapy 2/26/2019 Herceptin (trastuzumab) Chemotherapy 5/22/2019 AC Surgery 8/14/2019 Mastectomy: Left; Prophylactic mastectomy: Right
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Jan 24, 2021 05:19PM - edited Jan 24, 2021 07:02PM by LW422

Hello Bklynstoops and TravelText. I appreciate your supportive words; I suppose the full effect of this life-changing diagnosis hasn't really hit home with me yet. I have decided to stop reading and googling; it just upsets me more. Many posts on this forum have the same effect when you're already terrified.

I appreciate hearing from those of you who have been living with this curse and are willing to share your kindness and experience with newbies like me. I'm just going to follow my oncologists treatment plan and hope for the best. I am a patient at MD Anderson's IBC clinic in Houston.

My best wishes to all, and to your husband, Bklynstoops.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 24, 2021 05:59PM Traveltext wrote:

LW422. You are at one of the very best cancer centers, so that's a huge plus. Always keep us up to date. And go back to those other forums here when you feel you need more support.

If you are into Facebook, go to the private group, Beyond the Pink Moon. This is a huge community and, as you would expect, feedback is instant!



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jan 26, 2021 06:33PM LW422 wrote:

I posted this in another thread, but I thought it might be interesting to add here as well. I got the pathology report on my 2 skin punch biopsies of my breast, and there is "no evidence of carcinoma" in the skin. Now I'm confused about whether the clinical diagnosis of IBC will prevail; I suppose I thought that the skin biopsy was the true determination of IBC. Any thoughts? I'm pretty sure my MO won't backpedal and change my diagnosis, but I will have a lot of questions for him when I see him on Tuesday.

At any rate I have an aggressive breast cancer so I suppose that's all I need to know.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 26, 2021 06:48PM Traveltext wrote:

LW. You can have IBC without a positive punch biopsy and it is often a clinical diagnosis. Mine was an aggressive tumor which caused an inflamed red chest. The necessary treatment began with chemo since the surgeon would not operate due to the affected skin. Surgery followed, then radiation. That was all completed over six years ago. Keep us posted.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jan 26, 2021 10:10PM LW422 wrote:

TravelText--this is all so confusing to me. It seems that there should be a definitive pathology to support the diagnosis, but it is what it is. My treatment will be similar to others... chemo, surgery, radiation. I requested a double mastectomy but the surgeon is pushing back, stating that they want the cancerous breast removed and healed to speed radiation, then the other breast removed later. I guess I don't understand why removing both would be cause for delayed healing, but I'm no doctor. (I don't want to be all healed and done, then have to go back for more surgery, more bills, more recovery time. Blah.)

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 26, 2021 11:08PM BSandra wrote:

Dear LW422, I can only second Traveltext - no positive pathology in many cases, especially when cells are scattered across large surfaces. My wife had it very red (imagine skin burned with boiling water), so PB showed carcinoma, but with light redness no wonder PB shows nothing. That does not mean it is not there (of course I'd wish it wasn't there!). If I were your MO, I'd treat you for worst possible diagnosis, even if it is not there - that would give you advantages to access better drugs, better care, and get more attention to detail from your MO and personnel around you. Keep us posted if you have any questions - if we know some answers, we'll try to answer them:/ Saulius

Since Sep2019:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 27, 2021 01:10AM Traveltext wrote:

LW. Why do you want a double mastectomy?


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jan 27, 2021 09:15AM LW422 wrote:

Hello Saulius--thank you for the info. My very best wishes to your wife and to you. I believe I will be getting rigorous treatment since I am lucky to live near MD Anderson in Houston where I'm being treated at their IBC Clinic.

I know that IBC is a clinical diagnosis but it's still confusing how some people display the same symptoms and are not diagnosed IBC. I have a lot to learn. Thanks for your kindness, and I know I'll have plenty of questions as my treatment goes forward.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 27, 2021 09:21AM LW422 wrote:

TravelText--just a personal preference on the double mastectomy. I don't plan any reconstruction and I'm a "D" cup, so I'll look pretty lop-sided with only one. I don't want to deal with prosthesis, and the option of never having to wear a bra again is very appealing. Plus I'd never need another mammogram, or have to worry about BC in the healthy side... it's just the best solution in my mind.

Since my chemo is going to be 24 weeks, I'll have plenty of time to consider all my options.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 27, 2021 03:42PM sbelizabeth wrote:

LW422, I'm thinking your team wants you to delay the mastectomy on your non-cancerous side because they want to move to radiation as soon as possible. If you were to have the crapalactic luck to have surgical complications or infection on the non-cancerous side, it might delay the beginning of radiation treatments.

But I'm guessing. You should feel free to ask "why can't we remove both breasts in the same surgery" until you get an answer that you understand and are comfortable with.

My team wanted me to wait on removing the non-cancerous side until after radiation. I knew I wanted a DIEP reconstruction and mastectomy/immediate reconstruction is much easier than building a new "breast" from a flat chest.

I spent 18 months lop-sided. I couldn't wait for recon. Like you, I had large-ish breasts and with one missing in action, I felt like I ALWAYS had to wear a bra with a prosthesis.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 27, 2021 05:08PM LW422 wrote:

SBElizabeth--I'm sure they know best, but I just hate the idea of having everything all healed up and returning for more elective surgery. I suppose I'll have to learn to deal with it, since nothing I want seems to matter to cancer.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Feb 9, 2021 08:01PM LW422 wrote:

Just dropping by to say that I had my FIRST CHEMO (Taxol) today!! I am happy to report that it went well (and I know it will get worse but one day at a time.)

Hope everyone is doing well.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Feb 9, 2021 08:43PM Traveltext wrote:

Go LW. Okay, best not to expect the worst. My oncologist always said: "Never have any pre-conceived notions about any aspect of your diagnosis or treatment" For me, chemo never got worse after the first treatment!


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Feb 10, 2021 09:04PM sbelizabeth wrote:

Everyone's different. Some of us spend a week in bed feeling tired and achy and nauseated. Others spend a couple of days feeling foggy. I've found it's very common for people to feel completely normal the day of, and the day after their chemo treatment. It's day three when "whatever you're going to feel" begins, and for me, that feeling only lasted two days.

If you experience anything really awful--like a lot of nausea/vomiting, please call your doctor. There are ways to help. SB

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 10, 2021 09:13PM LW422 wrote:

Hi SB! I felt great today so I'm waiting to see what's lurking for me tomorrow. My doctor sent me home with a prescription for nausea medicine and I got it filled. I have read that some people take the medicine as a preventative to keep from having nausea but I don't know enough about that so I'll just hang in there and hope for the best. Thanks for your help; I wish I could sail through treatment like TravelText did!

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Feb 26, 2021 07:05PM LW422 wrote:

Hello all. I hope some people are still reading this thread; it's very quiet here in IBC Land, which hopefully is a good sign!

I have a question for those of you who have gone through chemo with IBC. I notice that after a Taxol treatment, my IBC breast gets "angry" looking... much redder and a bit more swollen. I'm hoping this means the Taxol is in there, doing its thing. Did any of you experience something similar? Thanks!

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Feb 27, 2021 09:38PM dancingdiva wrote:

Hi LW422,

I check in the group every now and then. About the double m...I had cancer on the left side, tumor, nipple inversion. I wasn’t diagnosed with IBC necessarily at that time because it wasn’t red. In any case I had a surgery chemo double m and then rads. I was a size G. I didn’t want to be lopsided. I didn’t know how reconstruction would be. I was worried it would come back so I ddecided to do a double mast.
right after surgery maybe a month later I got a red spot on my right side now. Nobody thought anything of it and it didn’t get worse. A year later my lymph nodes on right side were big. I re-dx only in nodes,no tumor. They finally did a biopsy on the red patch. Came back +ve. I was shocked. So were they. Becuase they did the biopsy, my skin went nuts.
all this to say I only had cancer in my nodes on right side and my skin on right side, whereas I was only affected on left side the first time. I was surprised there was nothing on left side the second time around and am convinced the cancer got to the right side because I had the double mast and they cut into my right side.

I now believe if u don’t have to get something cut, don’t. If I could go back that’s what I would do. Just something to consider. But this is my experience and I know it’s a very personal decision and one that only you must decide. Good luck and remember you r not alone. Hug


Dx 5/2014, IDC, 6cm+, Grade 3, 5/7 nodes, ER+/PR+, HER2- Surgery 6/1/2014 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Chemotherapy 7/16/2014 AC + T (Taxol) Surgery 2/5/2015 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/2016, IDC/IBC, Right, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Feb 28, 2021 09:45AM LW422 wrote:

Thanks for that, DancingDiva. I have decided that I will simply follow my doctors' advice for standard of care since hopefully they know what treatment is most effective. I have a few more months before the surgery decisions are made but I'm sure they will promote taking the cancerous breast first to try to get a quicker recovery so I can move on to rads. Not sure how I will feel about removing the other breast by then, so we'll see how it goes.

I'm glad you took the time to post and I hope you are doing well these days.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)

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